Wednesday, May 27, 2009

I got a call yesterday from the Nurse Practitioner of the genetic specialists in Rochester. She informed me that Nathan definitely has MCADD. She said his bloodwork confirmed 100% that he has this metabolic disorder. His biochemical markers were all off and elevated which is what they look at. Also, his L-carnatine level was very low which is another indicator. Nate has to be re-tested for his L-carnatine levels in 3 weeks to see if he is bringing it up on his own at all, and then again re-tested at 3 months. This is the supplement that he will be on most likely if he doesn't bring it up, which most people with MCADD can't make this level come up with out supplemenatation. He will also have DNA sequencing on Aug. 4th to see if he has two sets of this cromosomal abnormality or just one. That will let us know if it is more or less severe of a case. However, the nurse said that the only real indicator of how severe it is, is the first time they get sick and need intervention. So that is why they treat each baby as if they are severe. So, now we are to just pray he stays healthy and well taken care of in cases of emergency. Also, she said I will keep waking him at night every 4 hours until the doctor sees he is able to be stretched slowly (they determine this with follow up exams on an individual basis), so that hopefully by a year old he will be able to go 7 to 8 hours between night feedings.When I first found out, I was crying again because I thought for sure they would tell me he was fine. He seems so healthy and perfect to me. And I know he is perfectly made by God and I have to trust this is his plan for now. I know it is manageable and the nurse kept saying that we just have to watch for signs and know when to take him in for treatment, but otherwise he should grow up like any other child. We just have to make some adjustments for him. We know that once he starts to eat he will have to eat a low fat diet and will have to keep from going long without eating. I thank you all again for your concerns for us and all of your prayers! We know that is what is getting us through and we are so thankful Nate is such a good eater right now. He is already 8 pounds and is getting chubby cheaks. We will pray now that his carnatine levels will rise and that if he has to be on this supplement, that his body will handle it well (supposedly harsh on the stomach sometimes). I will keep you updated as we have more testing and if sickness enters our house I will post it so that we can have more people praying!I wanted to share one of the things that brought tears to my eyes. It is really humbling to hear when people are praying for your family and are taking time out of their day to bless you. My dad called me to tell me that Nathan is being prayed for around the world. My parents have a couple living with them from Chile and their church over there prayed for Nate for an hour in their church service last Sunday and then had Nate on a 24 hour prayer chain so that for an entire day someone was praying for him each hour. How amazing!!! We are confident that God is taking care of our baby and is using you all to help.Thank you thank you!

Friday, May 15, 2009

Most of you probably have heard something about Nate being tested for MCAD. For those of you that know and have been praying, i can't THANK YOU ENOUGH. Your prayers have been heard and we have had peace in the midst of this uneasy time for us. For those of you that haven't heard, I'll give you an overview of the past couple days.On Wednesday my mom and I took Nathan in for a regular newborn checkup with his pediatrician that is routinely done a few days after they leave the hospital. His checkup went great. He left the hospital on Sunday weighing 7 pounds 1 ounce and was back up to 7lbs. 8oz. at the doctors office. The doctor said everything checked out well and we couldn't have asked for a better report. When we got home there were two messages from a doctor at a large hospital in Rochester, NY where all the newborns blood work is sent. (In the hospital, every newborn is given a heelstick to draw blood taken for a series of tests that may be detected by the bloodwork, but not physically seen yet.)So, the second message from the doctor definitley got my attention because she gave me her cell phone number and asked that I contact her ASAP. She told me that his bloodwork came back with a level of 2.7 for MCAD and that we had to take him to Rochester's genetic specialists the next day. She told me that MCAD was a genetic disorder that could make Nate very sick if not treated and if he wasn't eating well. She knew that the appointment could wait until the next day because she had called the pediatrician who told her how well he looked and that he was eating well.Thursday, Josh and I drove 2 hours to Rochester's Children's hospital where baby Nate was re-evaluated. The doctor was pleased with how well he looked (gaining weight, good muscle tone, alert, and eating well). She explained more about the disorder and what we do to treat/manage his care. More blood work was taken to make a definitive diagnonsis of MCADD that we will know the results of in two to three weeks. However, with his first result of 2.7, they said they would be surprised if he didn't have it. They have never seen a result over 1 where the child didn't have the disorder. It was a long couple of days for Josh and I and the rest of the family. We were completely shocked due to Nathan looking so healthy to us and even to the pediatrician. This disorder is newly found and we are thankful he was tested for it and diagnosed early. We are still praying the God will heal him and his results will come back clean. However, if He doesn't, we know He will get us through this and give us the strength to take care of Nate to the best of our ability.I will give you all some information that the doctor gave me on MCADD. It is a disorder where fat in the body cannot be broken down and used for energy. It affects someone when they are fasting, sick, or cannot eat and drink as usual. Children have more problems with this disorder since they need more energy and calories and are less likely to eat and drink when sick. Untreated MCADD can lead to severe effects. It is passed on genetically from those that have the disorder or carry the altered gene. It only affects about 1 in 15,000 people in the US.For us, this means we have to keep a close eye on little Nathan. I have to set my alarm at night and make sure he doesn't go longer than 4 hours without eating. We now have papers that we have to keep with us in case he needs to go to the hospital. The papers show the doctors and nurses how to treat a child with this disorder properly to ensure they will not get too sick and suffer worse side effects. We know when to take him in from the doctors guidelines and just will keep praying that God will give us wisdom in these situations.I am so thankful Nate eats well and is looking healthy. His slight jaundice that he had is almost completely gone and he has been more alert the past couple of days. He is extremely laid-back and mellow and smiles ALL the time even though I know its not on purpose :). He is such a delight to our family and we are so thankful God blessed us with him.We will keep you updated when we know more in a few weeks. If he has this disorder, he will be followed up with regularly by these specialists and will more than likely be on an enzyme supplement by 3 to 6 months of age that will help him out somewhat. We know God can heal him if its His will. And we know God will get us through this disorder if that is what is in store for Nate. Please keep us in your prayers as we wait on results. Please aslo pray that Nathan stays healthy so we don't run into complications from this. The doctor encouraged us by saying children with this disorder do well and grow up healthy as long as they are treated and monitored.We know we serve a mighty God!Thanks again for your prayers.We love you!Love,Josh and Sarah

Here is a picture of Nate "sunbathing" when he was slightly jaundice.

Abby and Will just love him so much. Will loves to hold him and Abby constantly kisses his head leaving her drool marks.

My sweet boy, Jesus is watching over you and has such great plans for your life!

Saturday, May 9, 2009

It feels weird to be posting from the hospital, but its easier here with no one around than to try and do this at home with the other two kiddos.

So I am making a weird face in this picture, but its 4:45 in the morning! We had to leave bright (it was really dark though) and early in the morning to get to the hospital at 6.

Josh in his scrubs getting ready to go in to the operating room with me. He picked up a box from the table because he felt weird just standing there to pose for me :)! He didn't know it was a catheter box... haha. but i think he would make a good lookin' doctor!

After trying 4 times they got my IV in and running. We went back for the surgery and everything went smooth and fast. The doctor wanted to show Josh first what the baby was and then have him announce it to me and everyone, but the quirky anesthesiologist wasn't paying attention and shouted "Look at that, its a boy" before Josh even saw. Oh, well. We were still surprised and SO happy. Little Nathan came into the world screaming at 7:51 a.m. He started crying on his own the second the doctor grabbed him, he was quick to let us know he was there. His apgars were 9,9. We are so thankful for this healthy little man.

Sleeping Peacefully. This is about all he has done since he has been born!

Friday, May 8, 2009

Hey this is Josh posting for mi wife. We have a new family addition. Nathaniel Mark Gehman.. Born at 7:51am, total weight 7lbs. 8 ounces 20.5" long. Looks a little bit like Will with the Bulldog mug. Very healthy, both Mom and baby doing well. Has some hair most likely going to be blonder later on. Thats it for now.. check in for more later..

Wednesday, May 6, 2009

Ok, in two days we will welcome Gehman #3 into our family! I'm so excited!!!! Josh has predicted we will have a little girl weighing 6 lbs. 14 oz. I am not so good at guessing games, but he wanted me to play a long. So here is my guess.... Boy 7 lbs. 12 oz.Will you play a long with us??? Leave me a comment as to what you think this baby is :). We'll see who's right.

My surgery is scheduled for 7 am, so we will be at the hospital really early. We will update soon!

Saturday, May 2, 2009

One of the main things I wanted to get done before this new one arrives was to decorate the kids rooms. We have been in this house almost 2 years now and i didn't have even one thing on Will's walls and he asked why he couldn't see his W-I-L-L letters that were laying on dresser. So, I actually put things up on his and Abby's walls and I'm finally finished. I'm definitely not artistic so it took me a long time.

Here are the pictures of Abby's room:

My first attempt at making curtains that pull up like that, so they are a little uneven and crooked... but I don't think Abby can notice :)!!

Her teddy on the old rocker that my mother-in-law had refinished for us.

Her cute birdie bedding that Josh picked out and surprised me with !!!

Her letters that started out white, then went to pink, then had polka dots, and now are staying green. haha.... you have to try lots of things out i guess when you don't have the eye to see what will work right away.... oh well, i had fun painting. The picture next to her letters is one that Will painted for her the day before she was born.

Abby's dresser, nightstand, and little white chair was somewhere in my house growing up - lots of use from this furniture. And the three pictures above the dresser are what I made for Abby that I found the idea online. Here they are closer.... (i just have to put the bible verse reference on them to finish them)

This is the tree picture with the bible verse Grow in the grace and knowledge of our Lord and Savior Jesus Christ. (if you click on them you can see them more clearly)

This is the bird with... For I am fearfully and wonderfully made.

And the flower with .. The Lord make his face shine upon you.

Here are the pictures of Will's room:

He loves his Will letters! His bed used to be Josh's bed that was just wood with carvings of his old crushes that I had to sand out. And the end table and dresser were mine growing up, probably pink or some girly color, but it all works in Will's room now.

The bat was from Jen and Shaun that they painted and never ended up using in their house. Thanks guys... I love it in here!

So now that their rooms are done and a few of my gender neutral baby outfits are washed... we are ready for little one to arrive next week!